Where to start?! I am way too long winded when I type so I’ll try to break this up. Maybe when I am ready to return to my personal blog, I’ll be a pro at shorter posts.
So many things. First…We saw the doctor yesterday after completing her THIRD antibiotic through the PICC (WE SURVIVED!). Zoe’s weight became a recent concern of mine so I assumed we would have to use her nose noodle again and we do. She wasn’t thrilled, but it’s doable. Her labs showed yesterday that she needed more fluid, which we already knew by tracking over the weekend how much she was drinking. The noodle will make it easier. The dietician said they can waste away quickly once they stop wanting to eat so this will help make sure she gets all the calories she can and keep growing/gaining before transplant.
Her disease is progressing, but she is holding steady right now so her score remains 19/40.
Last week, we added coconut oil to her solids, as advised, but she ended up having a severe reaction to it, which almost landed us in the Emergency Room. Luckily, it didn’t. Instead, we will do butter and olive oil in her solids. She likes to eat table food!
As you can imagine, going through something like this can change a lot of things for a family—including a marriage. Seth and I have talked about how important it is for us to be a team through it all, and we are. We do have moments of miscommunication, stress, tension, (some misdirected resentment and anger have reared their ugly heads at times), all of the grieving emotions (denial, anger, bargaining, depression, acceptance) (probably mostly me) but we have promised each other that we will be strong for each other and for the kids and get through it all.
Having said that, it is one of the reasons I encouraged him to go on his snowboarding trip recently, even though on the inside it was hard for me. (I didn’t think it would look good in front of the kids to lay down and grab his ankles and beg him not to go!) It did his soul good!
We also started talking about how I could get out for a few days and family made it possible. His coworkers even said something to him like, “You better let your wife have a break!!!” (THANK YOU SETH’S COWORKERS) In the 6 years since we have had children, I’ve never been away from them except for a 3-day conference for work. Seth encouraged me to make arrangements. I ended up being pampered by a friend and spoiled at dinner for a Girl’s Night Out (only missing Zoe…she will join soon), had a massaged gifted to me by my in-laws. We still FaceTimed all weekend, I still woke up all night like I normally do, but just the mental break was nice. This situation occupies a lot of mental/emotional space within me so I came home refreshed.
Seth had everything under control at home!
The truth is that when Seth got home, I had a bit of a breakdown after the ER that weekend and a tough night with Keegan Sunday. I knew it was coming because I have been feeling numb. Over the last few weeks I kept telling Seth I needed to cry but couldn’t, and knew it would come out sometime, somewhere. Well, that day came Tuesday, the day of the Blaze Pizza Fundraiser. I worked a few hours that morning and had a lump in my throat all morning. I knew it was all bubbling up inside of me. Then, as I was leaving work, I made eye contact with a friend and out it all came. Two friends at work hugged me, let me vent and told me to STOP apologizing for sobbing. (Again, it’s the not wanting to inconvenience people with our situation, make people feel uncomfortable because of everything…) From there, I couldn’t stop crying, it just poured out of me. I picked Keegan up from school and drove around for 2 hours so he could take a nap because the night before was so rough. Cried the entire time. By the time I got home, I rested, but didn’t feel up for Blaze, my eyes were almost swollen shut. I didn’t know whether I should go, feeling so yuck and blah (the only adjectives I can think of to explain how I felt) BUT, we decided to go.
And I’m glad I did! Wow! What a turnout. So many people came!!! Friends, friends of friends, coworkers, family, people who saw the story, SOMEBODY WITH A LIVER TRANSPLANT! So many people in their shirts! It was sooooo cool. People even asked about what we were all there for and about Zoe. So, I was glad I went and it did my soul good. See the photo gallery for some pictures from the night.. Zoe came for about an hour, too! Somebody asked me if I felt like I was at my wedding reception, haha! It was nice to talk to so many people, and it did feel a bit that way, except my champagne was replaced by a half-drank kid drink and I have no idea who it belonged to. The kids were all great and it made me look forward to the upcoming pancake breakfast.
You know when you get a new car and suddenly your bubble shrinks and THAT is the only car you see on the road? (and then you try to get in or actually DO get in other cars that are NOT yours?? Just me??) Well, that is sort of how I have felt recently with biliary atresia. I think I just mean that our world has become smaller and more connected to other people with BA or who know somebody (who knows somebody) who has a child with BA. For being so rare, it has popped up all around us. Of course social media makes it possible to see other stories and meet others, get support, etc. There is a lot going on with others I talk to who are on their own journey with biliary atresia. One, I’ve mentioned here, but there are others. Just keep them in your thoughts if you will?
I am jumping all around but…if you have kept up with this random stream of consciousness post, here is another thing I’ve thought about recently.
So, Zoe is going to need a liver that will fit her tiny peanut size. Since the preference is for a whole liver at this point, that means the liver will likely be from a baby/toddler. And I’ve had a hard time with this. Here we are shifting to praying for the perfect timing, perfect liver for Zoe, and meanwhile there is a family out there who has no idea they are going to lose a child. What a life-changing event that family and our family are/will experience. I think I have mentioned before that I know how important faith is in all of this, and how that seems to be hard for me because we are so dependent on science for this. I probably think about it all way more than I should. Anyway, I am praying, letting go and trusting.
I’ve thought about morbid things like, if something were ever to happen to my children, could I donate their organs? The answer now I would like to think, is yes. Could you?
I need to watch what I say. When we were teetering on another ER visit with the coconut oil reaction, Keegan overheard me tell Seth, “I’m scared.” Suddenly, Keegan looked at me and said “I’m too scared to go downstairs.” So, I need to watch it or Seth needs to learn to sign. (but even so, they would still sense and pick up on whatever I am feeling, kids are smart, you know) I was able to spend some one-on-one time with Keegan the other day and it was JUST what he needed. He knows there is something different about Zoe—just by the many routines we have had with meds, feeding, PICC, time away with her at Riley, appointments. He can’t express it but I know it affects him.
Which makes me again question things like wearing our Zoe shirts, talking about the events that are about Zoe, just the attention Zoe has, not only from us, but from family. I am just wading my way through this uncharted territory, but I do want to make sure that I’m not inadvertently hurting the boys. Hopefully they will learn compassion, patience, and a lot of other things from our journey-including-things just don’t always go as we think they will! And to take things a day at a time. I probably over-think this, too. They will be just fine, right?
Another thing. I think I have become a little more able to articulate what I need. I think it is a natural thing that when a big life event happens, people don’t know what to do. Some people reach out, others don’t want to be a bother knowing we are busy in our situation. Sometimes I have felt disconnected from others, my identity suddenly changing. I haven’t been able to say “Please ask me to lunch, please go ahead and consider me for this assignment and I’ll let you know if it works/doesn’t work” until recently. I am even more comfortable letting people know when I don’t want to talk about it all anymore. I think I am feeling a little better about being able to tell people when I need a friend, am feeling down, am feeling good, etc. I bet a lot of people go through that. Thank you everyone around me for being patient with me.
I had a conversation with a dad (who has a FaceBook page "Blessings for Benjamin") at the Blaze night and we talked about how amazing it is to have a lot of prayer/support when faced with a hardship. We also talked about how people are busy within their own lives, and sometimes it can be hard to have the lonely feeling with a tough situation, especially after whatever caused the hard time “ends” (but for the family it never really “ends”). I find myself looking forward to whatever our new normal is after transplant, but I also recognize the importance of support and understanding from people who have gone through similar situations. I know that level of need varies from person-to-person and situation-to situation. When things are good/stable, the support is used less. When things get harder, the support is needed more. Just knowing it is there and others are there are important things to remember. Seth and I have talked a lot about how we have had to lean on others, let others show up for us, be ok with knowing we can’t do it all. At first it was hard to accept even any meals/help moving, not wanting to put anyone out or burden anyone with our situation. Then came so much support for COTA on behalf of Zoe, the t-shirts and events…we didn’t/don’t want people to feel like they have to keep supporting different events and fundraisers, not wanting to put anyone out. Also, until recently the situation was so fluid-where sometimes she was doing better than other times. I’ve always prided myself on being resourceful and independent. This has been a humbling experience, too.
At the end of the day, I hope we are making the right decisions for Zoe and for our family.
So, to end this, we continue to take things a day-at-a-time and let go and trust the process. Isn’t it funny how those simple words of wisdom can be so powerful?